Communication key to treating disabled

Washington -- Physicians don't always know how to do the right thing when faced with patients who are disabled and encountering obstacles that stand between them and a productive life. But this information may be there for the asking, say those in the know.

Key to improving this patient-physician relationship is more effective communication, said Lisa Iezzoni, MD, a professor of medicine at Harvard Medical School, who uses a wheelchair. Make no assumptions and ask about their needs, preferences and lives, she advises.

Physicians aren't going to learn about these matters by applying a stethoscope to a chest, she said. "You actually have to talk to patients and ask them about their daily lives."

Dr. Iezzoni includes several vignettes on missteps made by physicians in an article in the Sept. 7 New England Journal of Medicine. Among them: a patient with shoulder pain who used a manual wheelchair was told not to use her arms so much. Another example was a single mother whose mobility was compromised by complications from diabetes. Her condition was so severe she was not able to get groceries for her family. Still, she was refused a prescription for a power wheelchair because her physician wanted her to walk.

Some 54 million people are living with disabilities. As the nation's population ages, physicians are likely to begin seeing many more. Individuals are also living longer with conditions that would have been immediate death sentences decades ago, and emergency medicine is saving the lives of people who would not have left the hospital in an earlier day. Meanwhile, increasing childhood obesity, asthma and diabetes point the way toward a future of even more disability, said Dr. Iezzoni.

Physicians often believe they automatically know what to do for patients with disabilities -- but they don't, said Alicia Conill, MD, a clinical associate professor of medicine and psychiatry at the University of Pennsylvania Medical Center in Philadelphia. Before multiple sclerosis made it necessary that she use a wheelchair, Dr. Conill thought she knew it all. But afterward, she realized she, too, had a knowledge gap.

Many physicians say, don't worry, the social worker will take care of any difficulties encountered, said Dr. Conill. "But in reality your patients are coming to you because they are desperate, they have had a major change in their life and they need guidance from their doctor, which is, unfortunately, not readily available."

Dr. Conill is also the medical director and chief executive officer of the nonprofit Conill Institute for Chronic Illness in Philadelphia, which she founded to develop educational programs to help patients, families and employers deal more effectively with chronic illness and disability.

It's not necessary for primary care doctors to develop extensive knowledge about a particular disability. Often a patient will know more about his or her condition than the physician does, or could, noted Dr. Iezzoni. But listening to concerns and helping to connect patients to community services can be a crucial part of good care.

Society has historically marginalized people with disabilities, Dr. Iezzoni noted. "And many physicians have internalized these common views." As a result, "Disability becomes the elephant in the room -- present but unmentioned."

Ignoring a disability can carry dire health consequences. The Healthy People 2010 initiative identified Americans with disabilities as being vulnerable to substandard care, she noted.

Impact on families

The impact of parental disability on the health of their children is another area that may be overlooked by a physician, said Ray Hyatt, PhD, assistant professor at Tufts University's Friedman School of Nutrition Science and Policy in Boston. He found that immunization rates for healthy children living in a family in which one or more parents reported not being able to provide for their own care were about 65% lower than they were for children living in families where the parents were not disabled.

"One thing that doctors don't realize when dealing with disabled adults is that they may be the only point of contact with the medical community," said Dr. Hyatt. "Just asking if they have children and whether those children have a primary care physician or a clinic they can take them to could make a difference."

"Although physicians learn volumes about treating underlying causes, many receive little training in addressing resultant disability -- difficulty performing daily activities and fulfilling social roles because of physical, sensory, emotional or cognitive impairment often compounded by environmental barriers," said Dr. Iezzoni.

Several medical schools are attempting to change that scenario. At Tufts University School of Medicine, for example, students are required to take a course in which people with disabilities serve as models in simulated medical interviews that combine a common primary care concern with a disability-related issue.

"While we don't have a clue as to whether the students will practice differently in the future, they will at least think twice about how they interact with their patients with disabilities," said Paula Minihan, PhD, MPH, assistant professor of public health and family medicine at Tufts. "They will say, 'Oh, I remember Paul, who was in a wheelchair and used a ventilator,' or 'I remember Lillian who was blind, or Karen who used a scooter and was pregnant with twins.' " The students will then harken back to these experiences and remember what they learned.

The University of Pennsylvania Medical School puts its students in wheelchairs and sends them out into the world. The comments are telling, said Dr. Conill. One student wrote in the required essay: "I've never felt so visible and so invisible at the same time." Another wrote: "I felt small and powerless as though everything around me was out of my control."